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This past week, Emily Wax-Thibodeux’s excellent essay, “Why I don’t breastfeed, if you must know”, went viral. As it should have. It’s a cutting, heartfelt expose of just how ridiculous the pressure to breastfeed has become, made all the more powerful by the author’s recounting of her double mastectomy.

Unfortunately, even breast cancer didn’t stop the haters from hating.

“95% of the time people don’t breastfeed for reasons other than terminal illness. This is a red herring argument. She shouldn’t feel bad for having a legitimate reason for not breastfeeding and if she does then its really a personal problem,” said one comment on a Today.com thread.

“We all understand should and can are different. A mother who cannot breast feed is different than a mother who can but chooses not to…Breast milk is better for an infant than formula, I don’t think there is a doctor, nurse or midwife who would say that formula is better…Shame people would criticize this mother who CANNOT breastfeed like it was her choice,” wrote another (who happened to be male).

And then there was the woman who insisted that “(t)here is absolutely zero systematic or general judgment against infant formula or bottle feeding. It is the absolute expected norm by the majority of adults and parents in our culture. No one cares if you feed your baby infant formula or use a bottle…Most children start on the breast. Most children are weaned. Most children are given formula and fed with bottles. There is no public backlash against infant formula or bottle feeding. But here’s an article that pretends “infant formula shaming” is some actual thing. No. It isn’t. Not in the real world of critical thought and evidence. The data doesn’t support this notion at all.”

In the FFF community, there was tremendous support for Wax-Gibodeux’s piece, but an underlying concern about the title – because why must we know why she isn’t breastfeeding? Is shaming more acceptable for some mothers than others? What is the litmus test that rewards us with a breastfeeding “pass”? If a double mastectomy doesn’t quite cut it, I don’t know what will.

So maybe we should stop giving reasons altogether.

For those who fear formula as a product, no reason in the world is sufficient for a baby to be given anything other human milk. It doesn’t matter if the baby has to be wet nursed by someone with an unknown medical history – that is still better than formula.

For those who like to shame mothers – because that’s what it really is about, enjoying the act of shaming, of making yourself feel superior, or feel better about your choices by questioning those of others – no reason in the world will make a mother above reproach. She could always have done more – after all, breastfeeding is 90% determination and only 10% milk production, as a recent meme proudly stated. Best case scenario, she might get pity – but pity carries its own heavy scent, similar to the sour stench of shame.

Giving a reason for why you didn’t breastfeed is pointless.

That doesn’t mean telling your story isn’t important, because our narratives matter; they help those floundering in their own messy journeys make sense of what’s happening and find community with those who’ve been there. But there’s a difference between telling your story and owning it, and telling it to defend yourself. One gives you power, the other takes it away.

We are at a turning point, I hope. Jessica Martin-Weber of The Leaky Boob has taken a stand against romanticizing the reality of breastfeeding, and is helping those in the breastfeeding community feel comfortable with bottle (and formula) use. When one of the leading voices in breastfeeding advocacy speaks out against a culture of fear and rigidity, that means something. Wax-Thibodeux’s piece has brought many powerful voices out of the woodwork, allowing women who’ve swallowed their shame to regurgitate it, and make the uninitiated understand just how sour it tastes.

Now is the time to draw a line in the sand. This conversation has moved beyond breastfeeding and formula feeding and whether one party is more marginalized than the other, or how superior one product is nutritionally to the other. We’ve been there, done that, and nothing has really changed. We’re all still hurting. We’re all still feeling unsupported, unseen, and resentful, like a 3-year-old with a colicky new sibling. Now, we need to stand up, collectively, and say it doesn’t matter why I am feeding the way I am. It is not up to anyone else to deem my reason appropriate or “understandable”. I’m going to stand up for anyone who has felt shamed about how she’s feeding, instead of just people who’ve had identical experiences to me, or those who I feel tried hard enough.

A breastfeeding advocate shouldn’t be afraid to admit she questions aspects of the WHO Code. A breast cancer survivor shouldn’t have to have awkward conversations about why she’s bottle feeding. A woman who chooses not to breastfeed for her own personal reasons should not have to lay those reasons out in front of a jury of her peers.

This Tower of (breastfeeding) Babble has reached a fever pitch. It’s time for it to come down. Pick up your axe and start chopping. And next time someone asks, simply tell them, “You don’t need to know why I don’t breastfeed. Because it shouldn’t matter.”

Every morning, I receive Google alerts for several terms: breastfeeding, formula feeding, infant formula, breastmilk, etc. And every morning, I brace myself, waiting for the inevitable headline that will cause panic among bottle feeding moms, or re-ignite the incessant argument between breastfeeding advocates and formula feeding parents (as if it ever needs reigniting – it’s like one of those trick birthday candles, always sparking back to life even after you’ve wasted all your breath), or force me to take some semblance of a “position” on an issue that is hardly ever black and white.

One might expect that this morning, I would’ve broken out in that annoying Lego Movie song. You know, ’cause everything is awesome!!!!!

Source: connectedprincipals.com

News broke that a study out of Ohio State, which examined sibling pairs where one child was breastfed and the other formula fed, had found that there was no statistically significant advantage to breastfeeding for 11 outcomes. These outcomes included things like obesity, asthma, and various measures of childhood intelligence and behavior. As the study explains:

“Breastfeeding rates in the U.S. are socially patterned. Previous research has documented startling racial and socioeconomic disparities in infant feeding practices. However, much of the empirical evidence regarding the effects of breastfeeding on long-term child health and wellbeing does not adequately address the high degree of selection into breastfeeding. To address this important shortcoming, we employ sibling comparisons in conjunction with 25 years of panel data from the National Longitudinal Survey of Youth (NLSY) to approximate a natural experiment and more accurately estimate what a particular child’s outcome would be if he/she had been differently fed during infancy…

Results from between-family comparisons suggest that both breastfeeding status and duration are associated with beneficial long-term child outcomes. This trend was evident for 10 out of the 11 outcomes examined here. When we more fully account for unobserved heterogeneity between children who are breastfed and those who are not, we are forced to reconsider the notion that breastfeeding unequivocally results in improved childhood health and wellbeing. In fact, our findings provide preliminary evidence to the contrary. When comparing results from between- to within-family estimates, coefficients for 10 of the 11 outcomes are substantially attenuated toward zero and none reach statistical significance (p < 0.05). Moreover, the signs of some of the regression coefficients actually change direction suggesting that, for some outcomes, breastfed children may actually be worse off than children who were not breastfed.”

I will admit that the comments made in several news outlets by the lead author of this study, Cynthia G. Colen, have made me want to run through the streets, acting as a one-woman ticker-tape parade in her honor. (Case in point: “I’m not saying breast-feeding is not beneficial, especially for boosting nutrition and immunity in newborns. But if we really want to improve maternal and child health in this country, let’s also focus on things that can really do that in the long term – like subsidized day care, better maternity leave policies and more employment opportunities for low-income mothers that pay a living wage, for example.”) But I’m not celebrating the results of this study, any more than I’d celebrate one that said formula feeding caused children to sprout green hair from their chiny-chin-chins and opt to live under bridges.

Why? Because this shouldn’t be a freaking contest.

The backlash that comes out of studies like these feels more like if someone came out with research that claimed fried Oreos were just as healthy as raw kale. Instead, we should be approaching it as if someone came up with a way to make a vitamin supplement that would offer similar benefits to kale, for those who hated the taste. One is natural, one is synthetic; one is manufactured, one exists organically. But for those of us who don’t or can’t eat raw kale on a daily basis, a good substitute is a godsend. (And maybe helps us justify those fried Oreos. A girl can dream.) Now, a study showing comparable effects of the supplement to the organic kale would not negate the fact that kale, grown in your own garden, is a nutritious, amazing thing – and tastes quite delicious to those of us who have a palate for it. If we started telling the kale aficionados that the supplement was better in some way, that would be a problem. But if the people who loved kale insisted that the supplement wasn’t a valid option and was somehow morally wrong, that would be a problem, too. Chances are, if we were really talking about kale, nobody would care all that much. The people who liked kale would eat it, and those who didn’t, might opt for the supplement – feeling confident due to the research that suggested the supplement was a viable option.

But we’re not talking about kale. We’re talking about breastmilk. And that, apparently, is where we all fall apart, and are rendered completely incapable of rational, measured discussion.

What the Golen/Ramsey study shows should not be controversial. The results should be reassuring- evidence that formula feeding does not condemn a child to a life of obesity, poor health, and lackluster intelligence; proof that whether a woman chooses, or is capable of, feeding a baby from her breast is not what defines her as a mother.

Imagine, for a minute, if we didn’t compare breast and bottle, but rather celebrated BOTH as valid, safe, healthy options for mothers and babies. Accepting that formula has legitimacy – that there is a reason it was invented (out of a need and a desire for a safe breastmilk substitute), and a reason why a woman may decide that a substitute is preferable – should not threaten those of us who celebrate breastfeeding. Yes, we should continue to rage against predatory formula marketing, especially in the developing world. Yes, we should speak up and speak out when companies (hello, Delta) retreat to 1953 when they express their breastfeeding policies. (For that matter, we shouldn’t need breastfeeding policies – if children are allowed, breastfeeding should be allowed. End of story.) Yes, we should ensure that women are entitled to adequate pumping breaks, and given solid breastfeeding assistance, and are supported by solid research regarding medications and breastmilk and best practices from pediatric professionals. But none of that means formula has to be Public Enemy No. 1. None of that means parents who formula feed should be left floundering due to an embarrassing lack of support and education. And for the love of god, none of that means we should be smugly celebrating when formula fed babies are shown to fare poorly, or gleefully rejoicing when and if the opposite occurs.

This is one study, with its own set of limitations and biases, like any other study in the modern canon of infant feeding research. But it’s a good study, artfully designed, and one that raises some extremely important questions about how the emphasis on feeding babies might be distracting us from the real work of supporting better maternal and childhood outcomes. Because speaking of retreating to 1953, it’s awfully easy to shove the responsibility for future generations onto women’s chests, rather than addressing true social inequities that can impact children’s lives. Maybe if we stopped wasting energy trying to prove how evil formula is, and just accepted it as part of life – not a slap in the face to our mammary glands, or an excuse for idiots to treat nursing mothers as horribly as they do now – we would have more energy to understand and destroy these inequities.

Or, you know, we could do what we always do and spend time looking for vague connections to the formula industry to discredit the study authors. Because that’s a really great way of helping families thrive.

Today, I posted an incredible piece from my friend Amy West on the Facebook page. Amy is a breastfeeding counselor and advocate, but more than that, she is an independent thinker who understands that the way we support breastfeeding and formula feeding mothers (and fathers) might need an overhaul. I don’t doubt that she’ll receive some backlash for her viewpoint, just my friend Jessica over at The Leaky Boob did for daring to “work” with me (someone who, according to some of her recent critics, should be her sworn enemy. I kid you not).

But people like Amy and Jessica are the face of the future – supporters of women and families first, who also advocate for and support breastfeeding moms. I feel confident that they are ushering in a new era of breastfeeding advocacy, and I expect it to do more in a few years than decades of the status quo has accomplished.

In that spirit, I wanted to share Kara’s FFF Friday. It’s a bit different than the usual fare, but I absolutely love it. She describes the flaws in our current rhetoric, which the people perpetuating these flaws don’t want to hear coming from me (because of my admitted bias and position as “formula feeding defender”); I’m hoping that because Kara is a breastfeeding mom, she might carry more weight with these folks. Because as I keep trying to explain – to no avail – my work is not about promoting formula or knocking breastfeeding. It’s about reforming a system that leaves more than half of us struggling with a lack of support and information, and the other half floundering around with something that passes as support, but often looks more like a pass/fail system that relies on fear and comparisons as a motivational tool.

Anyway. Happy Friday, fearless ones,

The FFF

***

Kara’s Story

My breastfeeding story is a success story, because I’ve breast fed my twins for six months now, but I still experienced a lot of pressure, uncertainty and guilt as a result of “lactivism,” so I agreed to share it.

I’ve come to loathe the “breast is best” rhetoric. I went into breast feeding knowing LLL and others were overstating the benefits of breastfeeding and believing that formula is just fine no matter why a family chooses it. But I had some difficulties getting breastfeeding started with my premature twins.* They were in the NICU for over a week. Throughout my pregnancy I assumed breastfeeding would be easy for me. I don’t know why since the process of getting pregnant certainly wasn’t (I started trying after reaching what doctors like to call “advanced maternal age” and ultimately succeeding with IVF), but I had read enough to know to request a breast pump a few hours after the surgery. Things started well – I was producing amazing quantities of colostrum and the nurses started turning away my contributions before my babies came home. But my son was on CPAP and the NICU nurses wouldn’t let me take him out of his plastic box for several days. My daughter wasn’t getting many interventions but only weighed four pounds at birth and although we tried in the NICU, she was too weak to nurse. I gave up trying to nurse them there and focused on pumping. I let the nurses give them pacifiers. I told them to use formula if there ever wasn’t enough colostrum/milk. And I ignored the hospital lactation consultant who told me I needed to pump a minimum of eight times a day to get my supply up in favor of sleeping through the night while I still could. That was all wrong, I guess? But here’s the thing: I hated watching them cry in their incubators with nothing to comfort them. And I wanted my babies to be fed and grow well so they could come home as soon as possible. I could see with each of the six pumping sessions I did manage that my supply was just fine. The LCs gave me a little schedule of target volumes for twin moms pumping in the hospital, and I was ahead of schedule. The hospital LCs never believed me and insisted I had to pump more often. But I hated pumping because not only did it hurt, but the sound of the machine had already turned into a voice saying “NIPPLE, NIPPLE, NIPPLE” mockingly.

My little Twin A and Twin B came home at 5.5 and 4.5 pounds, and both were pumped bottle babies. I still wanted to breastfeed and escape the pump, but couldn’t convince them and decided to give a private LC a try. I got a great one who *didn’t* bully me or pressure me, and with her advice and support, in six or eight weeks (who can remember?) I had them nursing full-time. It was hard work, and painful, but it was my choice to struggle through it because a) I’m a single mom without a ton of money and it was cheaper, and b) I had freaking TWINS and tandem nursing, once I mastered it, was the most efficient way to feed them – both at once, with the least amount of cleaning up to do afterwards. I also got through it because I allowed myself the option of formula if it ever was too much for me. I kept some pre-mixed formula in the apartment even though the advice I got from the pregnancy boards run by self-proclaimed “boob nazis” was not to do that, because I’d be too tempted to use it and quit. I stuck it out…because I had the peace of mind of knowing that formula was right there if there was ever some night when I couldn’t take it anymore.**

I never planned to breast feed past six months, but when we hit that milestone a couple weeks ago I suddenly found myself doubting. Was six months really enough? Was formula in fact an evil poison? Didn’t my premature twins need as much extra advantage as I could give them? How could I be such a bad mom to want to quit now that breastfeeding was finally painless and routine? I found myself desperately looking for support for weaning at six months and finding little. Even the advice I found on how to wean was predicated on the assumptions that my children had never had a bottle in their lives and were ready to transition to a full solid diet, no longer requiring breast milk, but just nursing for comfort. Eventually I found Fearless Formula Feeder, and thank goodness! But what happened to the person who ignored all the lactivist advice in the hospital?

Online breastfeeding support groups happened, is what happened to her. After I stopped working with my awesome LC, I consulted sites like Kellymom for information about minor issues as they arose (the thing about how after six weeks breastfeeding is easy peasy? Not entirely true). And I like to get information from more than one source (what can I say? I’m a researcher at heart) and read a lot of these sites. I found myself questioning my initial position that breastfeeding didn’t provide that many health advantages to babies. I started to wonder “what if they’re right?” I went through a period of deep anxiety when I thought about weaning. The times I had referred to the breast feeding support sites had insidiously planted these doubts even though I had done my research and debunked them before I started reading them. And these sites are the top hits of any online search for breastfeeding information, unfortunately. You have to dig deep to find the opposing views, and until I found them I felt like crap. I didn’t want to be selfish! But I really did want to stop and I kept digging for information until I found what I needed (which was just reaffirmation of what I already knew)

I’m going to be gradually reducing our nursing sessions over the next few weeks, because six months is plenty. Because I’m tired of plugged ducts and the fear of mastitis. Because I’m tired of being bitten by two babies at the same time. Because it will be hard to pump when I go back to work full time. Because I don’t want to pump when I go back to work full time. Because I’d like to go out on a weekend for more than four hours without dragging my pump around and using it in a dirty public restroom to avoid engorgement. Because my twins are doing great and eating solids now. Because breastfeeding was never how I bonded with my babies.*** Because formula is a pretty darn good food. Because I want to, and it’s my choice, and I shouldn’t ever have had to question myself about it.

* And as a whole separate issue, I was pressured by strangers about not letting my doctors ever tell me induction was necessary because it would lead to an unnecessary c-section…but with my blood pressure skyrocketing it was necessary. And you know what? I did get an epidural and I did end up with an emergency section. But I also ended up with two live children and I can sneeze without peeing, so there.

** Eventually I joined some twin parent boards and found them a lot more supportive of both supplementing and exclusive formula feeding.

*** You can’t be fully absorbed gazing into a baby’s eyes for too long when you’ve got to make sure you devote equal attention to the second baby, who also likes to squirm and try to fall off the pillow, and the other has reflux and you have an overactive letdown so you spend a lot of nursing time mopping up,**** and both of them nurse with their eyes shut anyway.

**** As glad as I am to have breastfed for six months, here is the memory of it that will last the longest for me: Tandem nursing and the refluxy baby finishes first. He requires immediate burping, so I carefully lift him up without disrupting the latch of the other…and he promptly vomits down my back. Since still-nursing baby is not gaining as well as the pediatrician likes and I am strapped to a giant double nursing pillow, so I find myself unable to get up, crying as vomit trickles down my back and puddles on my sheets. At 3 AM. This is what breastfeeding is for me.

This is an open letter to Chris Bingley in honor of his wife, Joe Bingley, whom he lost to severe postpartum depression.

Dear Chris,

I read about your beautiful wife Joe’s battle with postpartum depression, and I wanted to say… oh hell, I don’t know what to say. Because I’m afraid my anger about what happened to your wife will just feed your grief, and that is the last thing I’d ever want to do.

I write about the pressure to breastfeed, and what it is doing to women, and I hear stories every day that mirror what Joe went through. Women who suffer from a growing desperation, an inner knowledge that something isn’t right, even when everyone around them is willing it to be so; even when everyone around them is telling them it will all be okay if they just get some sleep, get some help around the house, or get over the “hump” of the baby blues.

And these women – more often than not – are seen by an array of healthcare professionals as they try to dig themselves out of this tunnel. The stories I hear have a common refrain – all they cared about was if the baby was breastfeeding. I came second. And all I heard was that breastfeeding was the most important thing a mother can do for her child and I was failing at that. This was my refrain, 5 years ago. I sang it and sang it until someone listened, until thousands of other women answered it with a song of their own. And our collective voices are rising, growing stronger by the day, shouting our song, screaming that we deserve more, that Joe deserved more, and that we will. Not. Let. This. Happen. Again.

PPD is a strange and mysterious beast; it’s not always tamed easily, and it feeds on different aspects of different people. For some, breastfeeding is a lifeline, the one thing they can do “right”. For others, it is the sandbag strapped to them as they are already sinking. But the problem is not breastfeeding. The problems is that we are so focused on breastfeeding that all of resources and energy are going to this one aspect of postnatal care – that we have forgotten that the mother’s mental and physical health should come first. I know most people will think that is a terrible thing to say – because doesn’t the baby’s physical and emotional health matter? But what they are forgetting is that a mother’s mental and physical health can afford to be a priority because there are other options to ensure the physical and emotional needs of the baby. Formula or donor milk can suffice. A father’s loving embrace, or a grandmother’s or aunt’s or uncle’s, can fulfill all needs until a mother is well. We are lucky to live in a time where moms can get well without sacrificing their babies’ well being.

But we are unlucky to live in a time where people are unwilling to see things this way.

Joe should have been helped. The professionals who she encountered should have looked at her face rather than her breasts. They should have seen she was sinking; they should have insisted that either a lifeline be thrown or a sandbag removed. There should have been protocols in place for her prenatal, delivery and postnatal care so that she was screened for and treated for PPD. There should not have been so much pressure put on her to breastfeed; she should have been told that all that mattered was her health and happiness, and that her breastmilk or lack thereof had nothing to do with her worth as a person or as a mother.

I didn’t know Joe. I wish I’d had a chance to. I wish she could be one of the voices in our choir of healing and hope. That she could yell with us and demand better of our governments, our healthcare providers, and our society, so that no woman would be left to drown; so that no woman would ever have to sing that stupid refrain again.

Because I’m sick of the same old song. And I’m sure Joe would be, too.

If people read one post on this blog, I hope to god it’s this one. I didn’t write it – it was submitted by Megan DePutter, who works as a Community Development Coordinator at a Canadian AIDS Service Organization – and therefore it tackles so much more than the usual mommy-war crap I tend to drone on about.

Please read this, and talk about it, and share it as much as you can. As Megan says, as we advocate and empower women to breastfeed, we cannot simultaneously allow women who are already marginalized feel more shamed and judged. This doesn’t hold true only for women living with HIV, but those dealing with a whole slew of medical and emotional conditions that might make breastfeeding difficult or contraindicated. Sort of puts a new spin on the saying “the perfect is the enemy of the good”, doesn’t it?

- The FFF

***

On HIV, Stigma, and the Pressure to Breastfeed

By Megan DePutter

I work in a small-ish community (about 130,000 people) in a town about an hour outside of Toronto, in Ontario, Canada. Locally, provincially and nation-wide, “baby-friendly initiatives” in health care and social service institutions aim to encourage and exclusive breastfeeding for 6 months. Bypassing for now the unfortunate name of the initiative (which seems to insinuate that any other approaches to feeding are “baby un-friendly”), I understand that these initiatives are evidence-based and well-intended. The problem is that, for the women I aim to support, these initiatives can create further isolation and shame to people who are already marginalized. The women I am referring to are women living with HIV.

See, while the complexity of the HIV virus is still stumping scientists who are working towards the distant prospect of a vaccine or cure, HIV has become primarily a social and a political problem, rather than a biological one. Canada is one of the best places in the world to be living with HIV – although it’s far from perfect. But here in Canada we have readily available treatment – treatment that is more effective and easier to manage than ever before. HIV can still pose health risks even with treatment, and the side effects can be unpleasant to say the least, but someone who is diagnosed today with HIV, takes their medication regularly, doesn’t smoke and takes care of their health can expect a near normal lifespan. This means if someone living with HIV today has access to treatment, health care and other necessities of good health, such as good food and stable housing (and these are big ifs for a lot of people), they can enjoy a full and productive life. They can work, they can love, they can even have children. That’s right – they can have children! HIV positive women can – and do – give birth to HIV negative babies. In Canada, with proper treatment, the risk of giving birth to an HIV positive baby is reduced to less than 1%! This is great news for women who are HIV positive and want to have a family. However, because HIV can be transmitted through breastmilk, it is important that they do not breastfeed.

Let me back up for a minute. HIV – which stands for Human Immunodeficiency Virus – is the virus that attacks the immune system and, left untreated, causes AIDS (Acquired Immune Deficiency Syndrome). The distinction between HIV and AIDS is important because today, with proper treatment, the virus can be successfully suppressed. Without treatment, the immune system breaks down, leaving the individual vulnerable to life-threatening opportunistic infections, at which point an individual is said to have acquired AIDS, and without medical intervention, will likely die. With treatment though, someone can live with HIV for decades and never develop AIDS. So, if AIDS isn’t the biggest threat to people living with HIV, what is?

The answer is unequivocally stigma. Contrary to a lot of myths, HIV is not spread through casual contact such as sharing sheets, linens, clothing, food, dishes or cutlery, bathwater, swimming pools, or toilet seats. HIV is not spread through touching, hugging, or kissing. HIV is not spread through coughing, sneezing, urine or feces, sweat, tears or saliva. Moreover, the effective use of condoms are a successful way of preventing HIV transmission during sex, and viral load suppression through medication further reduces the risk of transmission to a near impossibility. Methods of getting pregnant for couples who are sero-discordant (mixed HIV status) are plentiful. In other words, there is no reason to be afraid of living with, loving, or building a future with someone who has HIV. Yet HIV positive people continue to face rejection upon disclosure of their HIV status – from potential partners, from family members, from friends, from their church and from entire communities. People face discrimination in accessing housing and in the workplace and even from health care workers. Whether out of fear, lack of knowledge, or judgments around how someone may have acquired HIV (which often stems from racism, homophobia, sexism and/or stigma around sex or drug use,) social exclusion can be an everyday part of the life of someone living with HIV. It is impossible for me to overstate the impact that stigma has on the health and wellbeing of people who are positive, even at a time when people with HIV are at their healthiest.

Let’s get back to breastfeeding. For women living with HIV, motherhood can raise a gaggle of other complex social and emotional challenges. I’ve already mentioned that stigma impacts people living with HIV, but what about women specifically? People might assume that she’s a drug user, that she’s been a prostitute, that she’s been promiscuous. Given the judgments and attitudes that are often formulated around women’s sexuality, you can imagine what a woman living with HIV might face. For mothers, this stigma is intensified. And, since women with HIV must not breastfeed (although the best-practice around this differs depending on what country you live in; the guidelines are different for women living in countries without access to clean drinking water or formula) women living with HIV often face added judgment around their inability to breastfeed.

Since most women will not want to disclose their HIV status to others, they cannot divulge the very good reason they have for not breastfeeding when facing scrutiny. The questions they are inevitably asked by friends, family, and health practitioners cause anxieties for women who are attempting to keep their HIV status a secret. In some cases, people can be very pushy about it; I have even heard stories where family members or friends may get so involved as to physically attempt to place the baby on the breast and have the baby feed without consent. If a woman does disclose her status, she would, unfortunately, very likely face further stigma and judgments about her HIV status. And if word got around (which it often does), she could be virtually expelled from her community. For women who are newcomers, do not speak English fluently, or are living in poverty, community engagement is often an imperative component of physical, mental and emotional wellbeing. When it comes to keeping HIV a secret, there is a lot at stake.

Furthermore, pregnancy and motherhood can bring up feelings of guilt and shame about the illness; in addition to facing external stigma, many women experience internalized stigma, and may feel guilty for not being able breastfeed. Feeling guilty about not being able to breastfeed is problematic enough for any mother, but for women who are already marginalized, further feelings of guilt and shame add to an already pretty big burden. Some women may be tempted to breastfeed despite the risks. Others may withdraw from social circles. Others may be reluctant to access social services or health care where they are made to feel guilty about formula-feeding or pressured to discuss their personal reasons for formula-feeding. For women living with a disease that needs to be managed through access to treatment, good health care, food, housing and community supports, social isolation can be dangerous.

HIV is not something a lot of people think about today, but it still exists – it’s just hidden. Unfortunately a lot of health care workers in our community are unaware of HIV, the scientific developments in prevention and treatment, and the social implications of the disease. HIV workers aim to help support women through these challenges, but we need our communities to be aware of these issues and help create supportive environments. Just because women living with HIV do speak openly about their illness does not mean the problem has gone away.

Mothers who are living with HIV need proper information and support around formula-feeding, and they need this information offered in a non-judgmental space. When programs are designed they need to take in to consideration the multitude of needs that may be spoken or unspoken. I believe it is important that health-promotion programs, including those that support breastfeeding, be designed in an inclusive way. Women already face extensive social and political control – particularly around our bodies, sexuality, and children. It is important that social and health care programs foster independence, support diversity, and create a safe atmosphere that is free of judgment and respects the privacy and confidentiality of all women. This is about respecting the critical health priorities of women who may already have extensive trauma issues and already experience marginalization. I know there has been a lot of important and empowering work done towards providing better support and education on breastfeeding that is free from the outside influences of companies who sell formula, but we need to prevent the pendulum from swinging towards exclusivity. I hope to educate health care and social service providers in my community to share information and create spaces that are built on models of inclusivity and support, rather than stigma and shame.

Please feel free to contact me at communitydevelopment (at) aidsguelph.org for more information or if you have tips or suggestions to share on how service providers can create a supportive environment for all women! For more information about HIV and AIDS, you can also contact your local AIDS Service Organization. Other great resources are thebody.com and CATIE.ca.